Video Producer/DoP - Dan Sanguineti
Camera Operator/Assistant - Michael Watson
Video Editors - Peta Lioulios and Dan Sanguineti
Module 3 recognises the role of informal carers for dementia patients, who they are, where they are, and what role they play in enhancing wellbeing for patients. It is now well documented that the role change and strain placed on informal carers can impact their own health and wellbeing negatively. The contents of Module 3 give insight into the toll that providing unpaid and often unrecognised care for dementia patients can have. Health professionals need to include informal carers into their care planning and this added insight may facilitate the provision of informed, individualised care.
The theoretical knowledge gained from this module is enhanced by additional learning opportunities. The content of this module is linked to examples in Ed’s narrative, activities and learning strategies to better understand the concepts.
The activities and resources for each module are suggestions. However, many of these are suitable for use with other modules, and you may choose to mix and match to suit your need.
|Journal excerpt||Points to consider & suggested activities|
Journal Excerpt 3.1:
Tuesday, 5 February 2008
3.1 Points to consider:
3.1 Suggested Activities;
Discuss effect of long-term caring on the:
Journal Excerpt 3.2:
Wednesday, 7 May 2008
3.2 Points to consider:
3.2 Suggested Activities:
Journal Excerpt 3.3:
I looked at Mary and said five dances aren't many. Did you go to dances in Mullumbimby? "Yes we used to go sometimes." "Was this before or were you dreaming it now?" "Yes I was dreaming it", and she grinned. "Ok I'll see you in the morning", and as I walked to my room Mary said, "Can I have the next dance?"
"It's a bit late", I replied." I think they have finished the fifth dance already." "Yes", she replied and fell asleep.
Saturday, 8 November 2008
On her way to bed she asked, as she often does, "where am I sleeping tonight?" We gave the usual answer: "In your own comfortable bed as usual." Mary seemed satisfied.
Comfortably tucked into bed she unexpectedly asked, "Do I get paid for washing the sheets?" Maree, thinking quickly, jokingly replied "If you do a good job." Mary smiled and soon was asleep.
15 November 2008
Mary is spending more time concentrating on the invisible people who occupy her world and is resting and sleeping a lot more now. This includes sleeping longer in the morning.
3.3 Points to consider:
–contemplate the benefits of reminiscing
The care approach:
3.3 Suggested Activities:
Adapt and /or brainstorm help sheets to develop person-centred care plan
Use help sheets to help explain to Ed what is happening to Mary
Develop material for Ed
Journal Excerpt 3.4:
Sunday, 28 December 2008
I was alone (Maree in Toowoomba and Jess away for Christmas Day. I couldn't lift her so made her comfortable on the floor). Luckily, Becca and Raif Redding. were to visit, and when they arrived two hours later Raif helped to get Mary to the chair. Lately it usually takes two people to assist Mary to get from one place to another in the house, e.g. Lounge to bed, lounge chair to divan, chair to commode, and lounge to sun room. It is no longer possible for me to manage Mary at home on my own.
Mary is sleeping longer during the day. However she sleeps soundly at night - from about 10pm to 6 -7 am next morning. Appetite still good and bowels working well.
3.4 Points to consider:
What’s happening to Mary’s skin?
3.4 Suggested Activities:
Timeline exercise; look at early life experiences as well as cultural, immigrant, environmental (depression, war, etc.), and how these impact an 80-year-old
Understanding what services are available, why they are available
What could Ed be linked to:
(bringing people in to talk to the carers)
Review of services, and
Journal Excerpt 3.5:
Thursday, 1 January 2009
'No, you are not my father, he is dead.' Neither was she sure about Maree. "She is in bed". "Yes", I replied, "but who is she?" "I don't know, she is a bit of a mystery", she said with a grin.
Later I pursued the subject, asking: "How many children do you have?" "Four", Mary replied. "Who are they?" "Ava-Leigh, Maree, Kaleb and Orlando", she replied after some hesitation. "There you are, so Maree is your daughter." "So you must be my husband", she volunteered.
3.5 Points to consider:
3.5 Suggested Activities:
Journal Excerpt 3.6:
Mary often asks about her portrait, the one painted by Mrs Solesi in Bathurst in the mid 50's. "Where is it?" "Hanging on the wall behind you." "How long has it been there?" "30 years"
Mary believes that "Lewy" takes the original away and replaces it with a copy. Similarly, with her other paintings hanging on the lounge room walls.
Often when Mary is going from the lounge to her bedroom at night she asks where is she going and why are we going "this way". She will also ask which bed she is sleeping in tonight.
3.6 Points to consider:
3.6 Suggested Activities:
Examine/ Discuss the effect on carer of conversations that are not conversations:
Journal Excerpt 3.7:
She asked about our wedding photo and whether I was her first or second husband and where have I been over the years when she has had "Lewy". I said that I have been here looking after her with others.
She asked if we were divorced and whether I had died.
Mary continues to have delusions practically on a daily basis. See [sic] Lewy and his friend; sometimes animals. "Saw" children sitting on divan in the lounge this afternoon. Spoke to Mary about the possibility of going into residential respite. Agreed best to look after Mary at home. Matter closed.
Mary said that she saw Lewy on T.V. 'Border Patrol' - trying to get her painting through customs. However he was stopped and asked to explain.
Mary still asks [sic] "I want to go home."
"You are at home; this is our home 42 Wallaby Way, Warenda. It has been our home for a long time."
When Mary starts to walk from the lounge to her bedroom she often asks where we are going. "Where am I going to sleep tonight?""In your own bed where you always sleep."
3.7 Points to consider:
Carer Communication with the person being cared for:
Is respite available/being used?
What is the role of the family at this time?
Priorities: whose come first?
What type of support is needed and how could/should it be offered?
Why do you think the ‘matter’ is ‘closed’?
What are the short and long term effects of the ‘matter’ being ‘closed’?
Are the carer’s emotional/psychological/physical needs being met?
Journal Excerpt 3.8:
Friday & Saturday, 13/14 February 2009
27 February 2009
3.8 Points to consider:
End of life consideration
3.8 Suggested Activities:
Change (amplified loss of function)
–swallow (review diet):
Journal Excerpt 3.9:
Thursday, 12 March 2009
Mary not responsive this morning. Just wanting to sleep. Unable to shower, Lana gave her top and tail. Mary took Exelon OK but not able to eat - very sleepy. Not talking or responding in any way. Phone Greenhall who suggested I call an ambulance - maybe a semi-stroke. Spoke to Nadia James. - definitely not an ambulance - they don't understand her Lewy Body situation. Nadia suggested we get a specimen of urine (UTI). Tried but not successful. Nadia will call again at lunch time.
Wednesday, 29 April 2009
Continuous flow of morphine. Saline solution but no nourishment. Water swap [sic] in mouth.
On Saturday, 2 May 2009
3.9 Points to consider
End of life care